Monday, August 25, 2014

I came home to a lovely package sitting on my doorstep. I
knew it would be there, but was unaware of its contents. Inside was this beautiful
blanket made by Jenna for little Evanna. Tears flowed from my eyes as I read a
note that was enclosed stating how each Care Bear had their own special power,
but when thinking of Evanna, Braveheart Lion came to mind.

She made the blanket in hopes that it would provide warmth +
comfort to Evanna during her upcoming surgeries and to help her be brave. The
love for our daughter hasn’t stopped, and I am continually amazed how wonderful
this world is. It’s full of so many good people, and it only makes me want to
do my best to make this world a better place.

Thank you so much Jenna! You’re an awesome friend, and you’re
going to be an even better mommy!

Tuesday, August 19, 2014

1. Evanna is such a wiggle worm. If you place her on the
ground, 15 minutes later you’ll find she’s not in the exact spot you left her |
2. She is so picky about the temperature of her bottle. She refuses to eat if
the milk isn’t relatively warm, so sometimes we have to heat it up twice during
one feeding. I hope this isn’t a sign of what’s to come | 3. Evanna LOVES
attention | 4. She loves to kick, both while awake, and while falling asleep at
night | 5. She’s a very gassy baby, and I swear she has the LOUDEST farts!

Sunday, August 17, 2014

So we’ve gotten a tentative date for Evanna’s first surgery,
and though I don’t want to make the actual date public as there’s a possibility
that it can change – I will say it’s closer to the end of September. Why may it
change? Well first Nick and I approved to be added to the short notice list (so
if there is a cancelation, we’ll get a phone call giving us as little as 24
hours’ notice to get up to Edmonton). Other reasons why the date can change can
be due to another baby/child needing emergency surgery – so Evanna gets bumped,
Evanna gets sick (so her surgery gets pushed back), or her condition steadily
worsens and gets pushed up. So as you can see, even though we have a date, it
can easily change.

As the date for Evanna’s first open heart surgery
approaches, I have been getting a lot of people asking me what they can do to
help, so I’ve thought about it and came up with a list:

+Donate blood! Evanna hasn’t needed a transfusion
yet, but I’m sure she’ll eventually need one and many more in the future. It’s
such a simple thing to do, and only requires about an hour of your time. So
what are you waiting for?

+Are you a runner and enjoy marathons? How about
a fun family walk? Live in Calgary? If so, you’re in luck! Every October the Calgary
Heart Beats Children’s Society holds a Family Fun Run, with proceeds going directly
to helping children born with congenital heart defects and their families. I
can personally tell you that Nick and
I have TWICE now received an envelope containing gas and grocery gift cards
every time we’re required to go to Edmonton for a major procedure. Though this
year we can’t participate because Evanna will be in the middle of recovery, I
can’t wait to participate next year! Clink HERE for more information and
to register.

+Volunteer. Find the closest Ronald McDonald
house, and find out how you can get involved! Whether it’s by donating some
groceries, baked goods, or extra event tickets that you won’t use and another
child and their family could enjoy (ie. hockey, football or baseball game).
Gather a group of friends and family members and be a part of their “Home for
Dinner” program by cooking up a meal for families currently staying there. This
was probably our favourite thing about the Ronald McDonald house. Families
staying at these houses are going through such a stressful time, and having a
meal prepared makes such a difference – it enables the family to concentrate
their time on getting their sick child healthy again. Once things settle down,
our family plans on doing this on Evanna’s “heartiversary” for the Calgary
Ronald McDonald house. I know most Ronald McDonald Houses have “Wish Lists”,
and they specifically list items they need (and what they don’t need). Click here
for Edmonton’s Wish List, and here for Calgary’s. I know I get readers
from around the world, so don’t hesitate to look up what your local Ronald
McDonald house is in need of!

+Donate! CHD research is severely under-funded. In
the United States, twice as many children die from congenital heart defects
each year than from all forms of childhood cancer combined, yet funding for
pediatric cancer research is five times higher than funding for CHD.

+Organ Donation. Just at least think and ponder
about it. There are so many babies and children waiting for a new heart, and knowing
that this precious gift comes from a time of tragedy and sorrow for another family
weighs heavily on them. Though Evanna can’t have heart transplant because of
her type of defect, I still want to bring attention to organ donation because of
how many heart families I know that would greatly benefit from it.

+Educate yourself. Before I was pregnant with
Evanna, I hadn’t heard much about congenital heart defects, nor how common they were (1 in 100 babies are
born with a heart defect). Now I feel like every time I turn around, I meet
someone who either has a heart defect or know someone who does. Learn the
language. I might speak in acronyms like ECHO, CATH, ECG, etc It’s okay to ask
me what they mean – or better yet – Google them.

+If you are pregnant, or know someone who is –
understand the importance of the detailed ultrasound (done usually around 18-20
weeks) and ask questions! Do you see 4 chambers? How about the blood flow? Etc.

Days leading up to our ultrasound, I was soo excited to find out if we were having a boy or girl, but the
detailed ultrasound is so much more than that. Not all CHD’s are caught
prenatally. I’ve meet a few heart moms who didn’t know their child had a CHD until
after their baby was born and I am so glad that we had our detailed ultrasound
done at one of the best diagnostic imaging facilities in Calgary with highly
trained technicians. After your baby is born, watch for signs. Is a murmur
heard? Are they breathing fast? Any retracting close to the ribcage? Are they having
a hard time eating? Any bluing in the feet, hands or around the mouth? I am not
trying to scare anyone, but if you think something is off or not right, share
your concerns with your doctor!

+Prayers.
We’ve have seen the power of what fasting and praying can do – so really,
that’s what we need the most. Don’t pray? That’s okay – we’ll accept positive
thoughts too! Whatever it is that you do to help get through a tough situation,
please send our way!

+We are not asking for handouts but I know there are some people who really want to know
what they can do directly for our family. Honestly, because of our healthcare
system (I will never complain about taxes again), this hasn’t been too much of a financial burden for our family. I may
not go back to work in a fulltime capacity as quickly as I anticipated – but
that’s okay, we’re fine with me going casual. Again, we just need your love, support and prayers!

Thursday, August 7, 2014

Just got back from a cardiology appointment this morning, and let's just say they are super impressed with your eating and weight gain. When I told them how much you were eating, the staff (Dr. Fruitman, Patti - our nurse, a student and a dietitian) were just besides themselves, considering you're both a heart and 22q baby (both tend to have eating and weight issues). You go girl!

I can't believe you're already 100 days old! Sometimes it feels just like yesterday that you were born, and other times I've forgotten what life is like without you. We love you Evanna! xo

Tuesday, August 5, 2014

At our last cardiology appointment with Dr. Fruitman, she said she felt it was time that Evanna had
a cardiac cath (click here to read what a cardiac cath is) to get the process started for her first open heart surgery. She
was to present Evanna at the next pediatric cardiology board meeting (these are held
every Tuesday, and I believe it involves all pediatric cardiologists and
surgeons in Western Canada where they discuss current/on-going cardiac cases),
and we should get a call from Edmonton soon after scheduling a procedure date. I’m
not a patient person, so waiting for that phone call was hard. However, I was
expecting the cath would take place sometime in August. Well after waiting for
about a week for the phone call, on Monday July 21, Edmonton called asking if
we could come up that very week! They
had a few cancelations, and Evanna was at the top of the list to be seen and
wondered if we were able to come up that week for her cath (July 23 & 24).
I said that was just fine and called Nick to see if he could get off work.
Thankfully, Nick’s very understanding boss let him take off his last 2 nights
and it was all set. The whole thing would require for us to be in Edmonton for
a minimum of 2 days. I called the Ronald McDonald House up in Edmonton, but being
such short notice and needing a room for just a few days, I kind of knew we
wouldn’t get in (no big deal). They hooked us up at the Days Inn for the night
where we got a good discount (it comes with breakfast too!).

The first day involved an ECHO and preadmission clinic.
ECHOs are not that easy now that Evanna wiggles more than she use to. We had to
take a couple of breaks, and I am so glad
that Nick was there to try and put her to sleep every time she woke up. The
very experienced (and patient) tech that did her ECHO also sang to Evanna which definitely helped.

After the ECHO, we had lunch and headed to the preadmission
clinic. We meet with a nurse who went over Evanna’s history and talked over the
procedure with us. Blood had to be drawn (which is seriously not an easy thing
to do on a small baby) as they always have blood on hand in case of an
emergency. We met with an anesthesiologist for a few minutes and then finally we were sent on our way around 3pm. We checked into the hotel, and went for
dinner soon after. That evening wasn’t exactly the easiest for us. After being
poked and prodded all day, Evanna was a little restless and it took her awhile
to settle down. Thankfully she slept through the night.

Evanna’s cath was scheduled for 11:30 in the morning, so
after grabbing a bite to eat, we packed up, checked out and headed over to the
Stollery. They had us change Evanna into a hospital gown (Evanna swam in the
smallest one they had). They put some numbing cream on her hands (for the IV), and
walked us over to the Cath Lab. We meet Dr. Rutledge who went over what she was
going to do and signed the consent form. We then meet the actual anesthesiologist
(who was an interesting fellow – but extremely nice), and once the room was
ready to go, had Nick walk Evanna to the back. It definitely was a little sad
handing her over, but we knew she was in safe hands.

They handed us a buzzer that would alert us to when the
procedure would be over (just like those ones you get at a restaurant), and
told us it would be about 2 hours. Nick and I headed to the cafeteria and did
what we could to help pass the time. We ate, and after 1.5 hrs our buzzer went
off! We walked as fast as we could and checked in. They showed us to a room
where Dr. Rutledge would meet and go over the results with us. We passed where
Evanna was recovering along the way, and our nurse held her thumb up! Side
Note: before Evanna had her Cath the nurse asked how old we were, because the
staff thought Nick and I were very young. I laughed and said that we’re 25 and
26 years old – so not as young as they thought.

Dr. Rutledge walked in and said the procedure went well. She
talked about Evanna’s collaterals (she counted 5), and that they all had
stenosis (narrowing) as they got closer to the lungs. She told us that we
should hear from our cardiologist a few days after the next board meeting and
expect surgery within the next couple of weeks to couple of months (she also
indicated that Dr. Rebeyka would probably be our surgeon). We thanked her, and
she stated that she would check on Evanna a little later.

Finally we were able to see Evanna. She was still waking up
when we saw her, and was a little groggy from the anesthesia. They said we
could try giving her a little sugar water, but Evanna’s throat was very sore
from being intubated. The saddest part was Evanna’s cries. Because of being
intubated, you could tell it hurt her to cry. They were so soft and you could
tell it took a lot of effort. They had me climb into the bed with her to see if
she wanted to be held and hopefully get her to eat a little bit. They packed us
up and transferred us up to unit 4 (with me in the bed holding Evanna) because the Cath Lab closes
at 6pm. We arrived on unit 4 and we were met by our new nurse. The nurse said
she was surprised at how big Evanna was! She had read her file and was
expecting a much smaller baby. It was so
great to hear that.

We had to stay for a minimum of 6 hours as a precaution, and
overnight if Evanna was having difficulties. Thankfully Evanna was a little
rock star, and after a quick visit from Dr. Rutledge, we were able to leave at
the 6 hour mark! We left at 8pm and after filling our car with gas, we headed
back to Calgary. Though we were in Edmonton for less than 48 hours, it
definitely felt a lot longer than that. We’re so thankful there were no
complications and everything went smoothly.The Stollery and all its staff are so awesome, and we can't express our gratitude enough for all they do

Update:Dr.
Fruitman called me about a week after Evanna’s cath (1 day after the pediatric cardiac
board meeting), and explained that her and Dr. Rebeyka went over the results. They
are definitely more favourable then what they were expecting (when Evanna was 1
day old, her CT showed that none of her collaterals were bigger than 1 mm, and
if they didn’t grow, there would be nothing they could do). Dr. Rebeyka wants
to do surgery in September (just like I guessed), and wants to bring her
collaterals together (called “unifocalization”), insert a conduit, but leave
her VSD open for now. She explained the reasoning for this to me, but the day Dr.
Fruitman called was also the same day that Evanna had appointments at the
Children’s Hospital all afternoon, so my mind was a little mushy by the time
she called me, so I’ll ask her to explain it to me again at her next cardiology
appointment this Thursday. She also said Evanna will require another cath a few
months after her surgery to deal with the narrowing of her collaterals (ie.
inserting a balloon or stent), but they will wait until she has recovered a bit before proceeding with that.